Monthly Archives: January 2017

It was not as if I had planned to go and then couldn’t at the last minute. I knew from the outset that I would not be able to attend the Women’s March. There is no delicate way to say this, but even maintenance level chemotherapy banishes you from events where there’s the possibility of being bathroom insecure.

Where I Was While Others Marched

So, I was at home while others were out at the biggest gathering of women in my lifetime. I had made my peace with that. It was a lovely afternoon really. Apple wood on the fire, a momentarily mellow dog, a book I’d been looking forward to cracking open. All very cozy. I checked in and looked at the photos that friends were posting from marches in New York, Boston, Montreal, Toronto, DC, Knoxville, Miami, even little Concord, New Hampshire. It was watching the Superbowl. You have a better view of the game on television than you would at the stadium.

Feeling Left Out

It was all good. Until some of you started posting pictures of yourselves attending the march with your daughters. That’s when I started to feel sidelined. Left out. What I would have given to have been in New York alongside my own daughter!

Two of my favorite teachers at the Women’s March in New York City

She is the social activist who inspires me most—not just a tourist marcher, but someone who works on the front line of these issues every day a New York City classroom.

But I couldn’t march with Abby and there will be other experiences in the future where I will likely be sidelined again. Which got me to thinking about living vicariously—not just on this occasion, but living vicariously through the experiences of others in general.

The Relatively New Privilege of Being There

I remind myself that for such huge numbers of women to be able to pick up and transport themselves to DC or Boston or New York is a relatively new phenomenon, and one born of a certain level of affluence. It is a marvelous thing that many of us now inhabit a world where we can do, or at least contemplate doing, all sorts of things that would have been impossible for our mothers and grandmothers. We can travel and have this experience or that one. The world is wide. It may not fully be our oyster yet, but we’re beginning to collect our share of its pearls.

With that newfound agency enabling us to be there in person, living vicariously through the experiences of others is in danger of becoming a lost art. Why watch when you can play?

Two Reasons Why Living Vicariously Isn’t All Bad

And yet there is something to be gained, I think, on those occasions when we must depend on others to be our eyes and ears. I’m still working on my manifesto about vicarious living, but here are a couple of thoughts.

#1—Living vicariously opens up conversation. Over time, it may even raise our general level of discourse.

When you can’t go yourself, you become hungry, greedy even, to learn everything you can about the experience you’ve missed. You learn to ask better questions. You sharpen that skill of being able to draw others out.

You also give others the opportunity to become better narrators. To shape and refine their own lived experience by putting it in story form. In the words of Joan Didion:

We tell ourselves stories in order to live. We interpret what we see, select the most workable of the multiple choices. We live entirely… by the imposition of a narrative line upon disparate images, by the ‘ideas’ with which we have learned to freeze the shifting phantasmagoria — which is our actual experience.

If people tell their stories in order to live, then being a receiver of stories is a life-giving act.

#2—Living vicariously helps us to see things from a different point of view. When we go in as our own agents, we tend to see the things we are already programmed or inclined to see. We tend to use the same filters over and over again, without even realizing that they are in place.

It’s good to shake that up. I find that the older I get, the more deeply entrenched I am with my own little tribe of categories. Perhaps we homogenize with age.

When I have to take things in through the eyes of others, I am forced to see them through the categories they use, through their presets. Maybe theirs are just as baked-in as my own, but they are inevitably different. Ergo broadening.

Learning to Bend

Sure, I still would rather be able to go out and do everything I want to do on my own. But even life’s imitations are proving to be good teachers. Some etymologists think the word vicarious may be related to the Old Norse word vikja which means to bend and to viker, the Swedish word for willow twig. I certainly haven’t achieved willow status, but I am learning to bend. And to live well, even when it has to be vicariously.

I make the trek to Boston for tests, consultations and treatment at the Dana Farber Cancer Institute.

Sometimes my sister Joanne or my friend Linda accompany me to these appointments. Through different paths, they have both become cancer whiz kids and at these appointments, they pick up on details I would miss. Not to mention the balm of good company they offer and the way they treat me to perks like chauffeur service and good hotel rooms.

But I didn’t tell either of them about this week’s appointment. I’m not sure why, but they tell you to follow your intuition in riding out this disease, and I just had this strong, unshakeable gut feeling that I needed to keep this appointment on my own. I needed to fly solo.

Maybe it was work related. With an annual meeting coming up, this is crunch time for some projects at work and I felt I needed to spend every minute between blood draws and appointments clicking away on my laptop.

But that may not be the real reason. I think there was a little reverse magical thinking going on. If I rally the troops and arm myself with my full support system, then maybe the universe will decide to give me bad news. Or if I bring out the A team, maybe it’s a sign that I am expecting something dire.

A Reason to Fret?

I was a little nervous about this appointment. Back in November, my local oncologist in New Hampshire called me at home one evening (never a good sign when an oncologist calls you after supper), to say that one of the numbers on my Kappa Lambda Light Chain was elevated. I never joined a sorority, but now my life runs pretty much off of Kappas and Lambdas. They help track a spike in the bad proteins that would signal that my multiple myeloma was kicking up its heels again. But when I confirmed that I had an appointment already on the books down at Dana- Farber in January, my local doctor decided to let things go until then. He told me not to worry and to have a good Christmas.

And I did. Prayer helps. And in my trade, the run up to Christmas is so utterly distracting, that there wasn’t time to worry. And after Christmas, there are those delicious days of hanging out with your adult children who now live in other states. I didn’t open the on-line patient portal and look at my numbers once.

But come January, the “what ifs” came calling. Or at least whispering. I did start to fret. It wasn’t over the top anxiety, but definitely a trip to worry camp.

One antidote to worry (and one that has become my personal protocol for managing these “big appointments”) is to make them fun. Don’t go to Boston for a doctor’s appointment. Go to Boston to play, and oh, by the way, pop in at 450 Brookline Avenue.

How to Distract Yourself in Boston

Because snow and ice were predicted on the morning I had to travel, I went down to Boston a day early. I indulged in a little childhood nostalgia of the Make Way for Ducklings variety, taking in the Robert McCloskey exhibit at the Museum of Fine Arts.

Vegetables at Eatily

I checked out Boston’s new Eatily venue, and after a plate of fresh pasta and a cone of pistachio gelato, I wandered through the market and loaded up my phone with pictures of vegetables. Cauliflower that looks like it came from another world. At bedtime, I reveled in the luxury of a Boston hotel room all to myself. Yes, the room was a tiny one in a former YWCA, but the toiletries furnished came in pretty tubes and there was a Flour Bakery across the street. Bliss.

Still, I couldn’t figure out why my gut had told me to make this trip solo. All these pleasures only would have been multiplied in good company.

In the morning, it became clear. Sometimes you need to do things alone, because going solo opens you up to new experiences. You wind up meeting new people and really talking to them—people you might have missed or only smiled at had you been deep in conversation with members of your own entourage.

In this alternate universe of Cancerland, it is good to meet new people. For me it’s been the silver lining of sickness.

Just How Many Interesting People Can You Meet in One Day?

I ended up talking to a Ukrainian Catholic priest (who also happens to be an MD) and learned a new word from him–epigenetics. Conversation about how meditation and contemplative prayer really can affect the way your genes perform. I met a woman who runs a support group for sarcoma patients and learned that sunflowers are special to those with that disease. (Note to self and my gardening buddies: let’s plant even more sunflowers on the triangle this year). I also connected with a hospital chaplain who got me signed up for an Interfaith retreat for women on the Cape Cod the weekend after Easter. And did I mention that the retreat is free, zero cost to Dana-Farber patients? The world is so generous.

If all those connections weren’t bounty enough, there was a serendipitous conversation with a woman in the cafeteria who asked if she could move to my table when it was revealed that an acquaintance at hers had a cold…Seriously people, do not mingle among the immune-suppressed when you have the sniffles.

We made a quick connection, having discovered that we both have multiple myeloma, and we swapped stories of how we came to have Dr. Anderson as our oncologist–a piece of mad, good fortune that we both unabashedly credit with having saved our lives. I wish there had been more time to ask her about the food magazine she edits, but I had to dash off to my next appointment and she was due for an infusion. However, we, exchanged emails and I hope it is a connection we will foster.

So what did I learn this visit? Happily, that command central at Dana-Farber thinks my Kappas and Lamdas are just fine. For now, I need not worry. Relief and once again, the deepest gratitude.

But I also learned that whether it’s a voluntary solo excursion or one you have no choice but to make on your own, it’s good to be open to the things that may unfold because you are on your own.

A Wise Woman From Maine Sums It Up

I couldn’t say it any better than Katharine Butler Hathaway:

A person needs at intervals to separate himself from family and companions and go to new places. He must go without his familiars in order to be open to influences, to change.

I am, at the moment, a teeny bit obsessed with Katharine Butler Hathaway and am trying to track down the exact citation for that quote. Born into a wealthy family in 1890, she suffered from spinal tuberculosis and spent most of her childhood and adolescence strapped to a board. The board didn’t work and she emerged from treatment at age 15 tiny in stature and with a severely hunched back.

But Katharine was one of those indomitable spirits. She went to Radcliffe, bought herself an improbably large house in Maine, and wrote an account of her travails and triumphs called The Little Locksmith. She died in 1942, and her memoir would have been one of those “lost books” had not one of the feminist presses republished in the 1970s. I’m glad someone did because she’s truly a gem and her words about disability, independence, and houses continue to inspire.

In short, I had a GREAT DAY yesterday at Dana-Farber. Oh, the places you’ll go (to quote another of my favorite writers)…with or without your familiars.

We will do our best on Sunday. My tiny, choirless, 99% white congregation in New Hampshire will give James Weldon Johnson’s Lift Every Voice and Sing and the African-American spiritual Every Time I Feel the Spirit our all.

But, truth be told, we will be sorely out of our element. Later in the day, I will watch videos of services conducted by friends who serve larger churches in urban settings–churches with black choirs or at least multi-racial ones–and yes, I will be just the teeniest bit jealous of the singing.

We have neither the gift for belting our spirituals nor, as a whole, the intense, activist spirit of Martin Luther King, Jr. There are some, I am sure, who would rather that our service this weekend make only the lightest of references to King’s legacy, or better yet, none at all. In the “ruralish” congregation I serve, our members cast votes for both Republicans and Democrats in November and we are still working out how to be together in the new political order. By “being together,” I mean more than just sitting coolly and/or civilly in the same sanctuary, but being our authentic selves and wrestling with the real questions of faith.

One of the ways we can be together is in prayer. Our politics may be divided and we may never learn to clap on beat, but on the plus side, one of the things our little congregation is rather good at is prayer.

Drawing on Baldwin’s book, there are three lessons we can all take from the prayer life of Martin Luther King, Jr.

#1–Prayer needs to be focused on others. Yes, Martin Luther King, Jr. prayed in a prophetic voice, and even as early as his student days, modeled his prayer life on the Old Testament prophet Jeremiah. But his prayers always started with the desire to understand and empathize with others. Baldwin writes of King’s belief that “prayer and the practice of praying should always begin with an awareness of and emphasis on the presence and needs of others” (98).

Prayer, of course, can express our personal longings, but we misuse it when we restrict it to ourselves and our own needs. King warned against approaching God as our “cosmic bellhop” or “universal errand boy.” (35).

#2– Prayer is not a substitute for human effort. Or to put it in King’s own words, “for work and intelligence.” As he encouraged others to take up the mantle of activism and to work for human rights, King came back to this theme again and again. Do not ask God to do what you are capable of doing yourself. “I take prayer too seriously,” he said on more than one occasion, “to use it as an excuse for avoiding work and responsibility.”

And finally, #3–Do not underestimate the importance of silence as a renewing force. Wyatt Tee Walker, King’s former Chief of Staff, describes the leader’s self-imposed “Days of Silence.” He would check himself into a hotel room where he “abstained from the distractions of daily life, including the telephone, television, and radio. The day was spent in prayer and meditation and in developing a rigorous discipline of think-time…” (vii).

As a pastor, King, no doubt influenced by his mentor Howard Thurman, urged his parishioners to steep themselves in the quiet nature of prayer. We are familiar with the ecstatic, rhetorical, and even theatric expressions of prayer in the Black Church, but there is also a more contemplative strand to this tradition—a thread expressed in spirituals like “Steal Away to Jesus” or “Hush, Hush, Somebody’s Calling My Name.

For King, times of quiet prayer were sustaining. The “vision in the kitchen” is a well-established trope in the King biography. One night in January 1956, in the middle of the Montgomery bus boycotts, King fielded a midnight call from a racist who threatened to kill him and blow up his home. Deeply disturbed by this and worried for his family, King turned to prayer. Or more specifically, prayer and a cup of coffee. There in the kitchen, he was comforted by an inner voice encouraging him to continue his work and assuring him that “Lo, I will be with you, even to the end of the world.”

Praying for Others. Working Hard and Taking Responsibility. Listening for God in the Silence. Those are some of the things we’ll be doing in rural New Hampshire to honor Dr. King this weekend.

P.S. The linocut of Lift Every Voice and Sing is used with the kind permission of Canadian artist Sue Todd and first appeared in Cricket magazine in 2015. You can see more of Sue’s work at www.suetodd.com. If you click on the Portfolio tab, you will find that she has a whole page dedicated to “Religion and Spirituality.”

It seems to be “a thing”—at least among some of my friends who are “creative-types.” Following the lead of Chris Brogan and others, they are choosing theme words for the year ahead instead of making New Year’s resolutions. Since I play a lot of Scrabble, make my living spitting out words, and have never had much luck with resolutions, this theme word approach caught my attention.

But picking words to guide your choices for a whole year is rather daunting. I’ve been auditioning a number of words for the past few weeks and finally have honed in on my choices. Here they are (at least until I change them):

WRITE

I do already write—a 2000 word sermon every week and who knows how many more words in the form of emails. This year I want to push myself to write in other formats—more letters, more journaling, more blog posts. Things get clearer to me when I scribble and type.

WRAP

As in “It’s a wrap.” In the year ahead, I want to make a concerted effort to finish the things I start. If you peel that back, what it really means is that I want to be a little more circumspect about what I do start. Everyone loves beginnings. A new batch of art supplies, a new trail to explore, a new book to read, a new project—the joys of embarking. And post-illness, when you are so very appreciative of new beginnings, it’s easy to embrace the world that has been returned to you a little too exuberantly and to start too many things. This year I want to focus not so much on starting new projects, but finishing ones are already underway.

The theme word gurus also mention that you should choose words that tap into more than one dimension of your life. The word “wrap” as a choice for 2017 should work well on one or two other fronts in my life. But more on those later.

RELISH

I always used to think of myself of someone who would live into her nineties. After all, my great aunt Charlotte lived to be 101—even with diabetes and a penchant for chocolate donuts. Multiple myeloma has changed my outlook. The most optimistic of my oncologists projects “a normal lifespan,” but his is still very much a minority opinion. Mostly, I avoid reading the life expectancy tables associated with my disease, because although they are changing, they are still grim. At least if you are used to thinking about life in the luxurious terms of rolling decades.

I am training myself to think in shorter blocks. Or to repeat the Schopenhauer quote several seemed to resonate with in my last post: Each day is a little life. There is so much loving and living to be crammed into a single day. I don’t mean blowing up the to do list and stuffing days with hundreds of thing to get done or experiences, but rather savoring, really relishing, the days as they unfold. Letting each one be the perfect jewel that it already is.

And if all else fails, relish as one of my words for 2017 can be 100% literal. All I have to do is pop open a jar of the delicious homemade relishes I received this Christmas. Thanks to friends who can, my pantry shelves are filled with treats like cranberry-ginger marmalade, yellow tomato jam, paradise jelly, bread and butter pickles, and blueberry jam. Even if I fall down on the writing and the wrapping, relish is fail-safe!